My MS Story

Thursday, December 5, 2013

MS Cannot Be Ignored

MS is a progressive disease and if you have been diagnosed with MS, be sure to take action and choose a treatment plan as early as you can. The sooner the better. I have encountered several people with MS that are not being treated for various reasons, but mainly out of fear. The best advice I received when I was facing the possibility of being diagnosed with MS was to choose a treatment as soon as possible. I'm glad I listened. The person that said this to me was a female co-worker in her early sixties who was diagnosed with MS when she was in her early thirties. She was in denial and chose not to face the reality until the disease progressed significantly and she had no choice. By the time she decided to treat her MS, she had too many lesions in her brain to count. She can walk but she appears to be drunk when she walks. She would fail a field sobriety test without any alcohol in her system. Now I tell people the same thing. Please take this diagnosis seriously and if you have to seek a second or third opinion, then by all means, do so but don't wait too long to choose the right treatment for you. Your doctor can help you make an informed decision. There are more MS treatments available now that were not available when my friend was diagnosed with MS over 30 years ago.

I began treatment for my MS the same night that I received my diagnosis. I already knew that there was a 50% chance that I had MS but it took almost a year because I only had 1 sign of inflammation in my T12 vertebrae of my spinal cord. That's the middle portion of your back. There was nothing noticeable on the MRI scan of my brain so the doctor could not diagnose me with MS until I eventually developed multiple lesions in my brain and additional lesions in my spinal cord within 7 months.

I am very, very passionate about staying informed and helping others with MS come to terms with their diagnosis and learn as much as they can about their enemy, Multiple Sclerosis. I did as much research as I could about MS. I really hoped that I didn't have it but I wanted to be prepared just in case. You may not like meds, and neither does MS. With the right treatment, you will win and MS will lose. You may not appear to have anything wrong with you for years, but it's not worth the risk to wait until things get worse and believe me, things will get worse. MS does not stop just because you don't believe in taking medication. Ask people with cancer and AIDS how they feel about all the medications that they take to sustain their quality of life.

My current MS therapy is aggressive and carries a risk of developing a rare brain infection called PML. Cancer, lymphoma, leukemia and AIDS patients face the same risk because anything that weakens your immune system can make you vulnerable to opportunistic infections such as PML. Thanks to the advanced treatments available for AIDS, the risk of developing PML is less likely. There is a common virus associated with PML called the JC virus, found in about 85% of the adult population. Most people have been exposed to this virus by the age of 10 but not everyone carries this virus. Those that do not have the JC virus cannot develop PML.

I found out that I do have the JC virus about 3 years ago but the risk factor has always been real for me from the day that I made the decision to try such an aggressive treatment. The effects of MS are far more dangerous and real for me to ignore. The risk is worth it for me at this time in my life. I have been on this treatment for 5 years and I have not had any relapses. The treatment does not take away or reduce the symptoms of MS. Tysabri slows the progression of this super ugly and complicated disease. Slowing the progression keeps me out of the hospital and able to enjoy my life.